I'm sure you recall the post we featured just before Christmas to welcome baby Porter to the world. Kara has Down's syndrome, her parents knew before she was born and sent this nervous message brimming with love to all their friends and family to tell them of her imminent arrival.
2 months on and Mum Sara has shared how life is for them. She's tired, has baby brain, is constantly feeding, going to baby groups, meeting other Mums, swapping stories... Oh, wait a minute... just like any other mum in the land!
|Kara sleeping soundly|
Once, twice, three times it’s a baby!
Hello again, excuse any mistakes but I did not get much sleep and unless its singing nursery rhymes or quoting Julia Donaldson the brain does not work. Kara is now two months and thriving – literally growing, feeding, and now smiling (probably wind).
I wish I could say we have been doing exciting trips but life is very normal. I think this is a point I would emphasise – we go to soft play, battle with the pram and buggy board, listen to the Gruffalo and go to the library. I also sometimes go out and chat with friends minus children – although we only talk about the children. If I could clone another pair of arms I might get everything done but any Mum with two children under four is going to say this.
Kara is a baby who has an extra copy of the smallest human chromosome – women have an extra bit of chromosomes hence the XX – men have less hence the XY. She looks and is a baby. No one makes any comment on Kara unless to say” isn’t she cute?” and “You forget how small they are ?”. Once I explain the condition you get two reactions – one of “OK and so how are you?”and the more common and very British “I know someone which has Downs”. It’s quite funny and exactly how I would react. I have a friend who has twins and we swop the stories.
I am still adjusting to the NHS. I think it is like the legal or education system – you need to accept and adjust to its idiosyncratic way of working. I have become more forceful and I have explained that Kara is my child and that we will ask for support if and when we need it. There seems to be a need to over inform – you will as all parents find your way and like all advice take what you want and leave the rest. You do have to fight for what and how you want to be treated. Everything offered is a service and not compulsory.
Are we happy – Oh yes. Do we feel any different from any other parents – absolutely not.
"On the subject of medical appointments,
am I the only one who feels the need to dress to be taken seriously?
I don't quite don shoulder pads, but it's not far off!"
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